John's Tumor

This blog is all about how I how used humor to remain sane while dealing with the insanity of a brain tumor the size of my wife’s fist. Why blog? To help other folks cope with serious health issues/brain tumors/cancer and give anybody wading through the muck of rehabilitation some hope or at least a chuckle or two. It will include a vaguely chronological story, books reviews, presentations to rehab patients, etc.

I keep bumping into folks who have recently received bad
brain tumor news. Sometimes they find me and sometimes I reach out to them.

Usually
they just want to tell their story – their symptoms, diagnosis, etc. – to somebody
who has an idea of what they are going through. It isn’t fun or easy or
rewarding, its hard and depressing. But I feel like I need to give them a
venue/listening ear/opportunity to talk to somebody who isn’t part of their
family and friends network.

And
then I read this: “Brain Cancer is the Deadliest Childhood Cancer.” That means
some poor kid who hasn’t ever had a chance to have an adult life is going to
have the opportunity of a lifetime, literally, snatched away from them.
Thinking about it just makes me want to curl up into a little ball, roll into a
corner and cry.

Alternately,
I want to wail at the sky about the unfairness of it all. I imagine young
parents being whacked upside the head with the worst news imaginable. If I were
them, the pain would be unimaginable, unmanageable and unbearable; especially
given the fact that they’ll have to “be strong” for their child and deny their
own pain.

As
the NY Times article points out, while that are more incidents of leukemia,
brain cancer accounts for more deaths because we (that’s all of us including
you and me) can’t figure out how to adequately fight this relentless nemesis.

If
it sounds like I’m venting, I am. A close friend of ours is dying from GBM. All
the usual inadequate treatments have failed to help this courageous, wonderful
woman who grasped every joy out of life that she could.

I
want to close by saying that I believe that brain cancer has an insidious
aspect to it that other cancers do not. Brain cancer destroys a fundamental
element of who a person is. As brain function disintegrates, the person we knew
and loved transmogrifies into a ghost of the person we once knew.

Wednesday, August 31, 2016

I
hate Ependymoma. It's a vicious and unrelenting form of brain cancer that disproportionately
attacks very young children and young adults.

Since we have a great friend who's fighting a very, very tough battle with brain cancer right now, so for me the wonderful work that the CERN Foundation is doing feels a light in a very deep and dark tunnel of darkness.

Our
ability to Ependymoma isn’t great, although many scientists, including the
wonderful ones supported by the CERN Foundation are trying their best to find a
cure (more likely cures).

I thought you should know that I
just received an email telling me that the CERN Foundation has published a
second edition of their Ependymoma guide that you can get for free. Here’s the
blurb from that email:

“If
you would like to order a FREE copy of the guide, send the following
information to administrator@cern-foundation.org: Your name, mailing address,
phone or e-mail. Indicate if you would like a pdf or mailed copy.”

There
is more than one “It” in “Use It or Lose It” -- our performance depends on a
variety of brain functions and cognitive skills, not just one (be it
"attention" or "memory" or any other).

Genes do not determine the fate of our brains.
Thanks to lifelong neuroplasticity, our lifestyles are as important as our
genes--if not more-- in how our brains grow and our minds evolve.

We need to pay more attention to Randomized
Controlled Trials (RCTs) to verify whether any intervention causes an effect,
and under what specific circumstances -- The media is doing quite a poor job,
in our view, to educate the general public.

The largest recent RCT (the ongoing FINGER
study) and a 2010 systematic review of all relevant RCTs provide useful
guidance: First, they report a protective effect of social and cognitive
engagement, physical exercise, and the Mediterranean diet. Second, the average
benefits at the population level appear quite limited, so we need to have
realistic expectations.

Cardiovascular exercise that gets the heart
beating – from walking to skiing, tennis and basketball – seems to bring the
greatest brain benefits; thirty to sixty minutes per day, three days a week,
seems to be the best regimen.

Light-to-moderate alcohol consumption seems to
lower the risk of dementia.

Taking "brain supplements" of any
kind does not seem to boost cognitive function or reduce risks of cognitive
decline or dementia, unless directed to address an identified deficiency.

The larger and the more complex a person’s
social network is, the bigger the amygdala (which plays a major role in our
behavior and motivation). There is no clear evidence to date on whether
"online" relationships are fundamentally different from
"offline" ones in this regard.

Chronic stress reduces and can even inhibit
neurogenesis. Memory and general mental flexibility are impaired by chronic
stress.

There is increasing evidence that meditation
and biofeedback can successfully teach users to self-regulate physiological
stress responses.

We will not have a Magic Pill or General
Solution to solve all our cognitive challenges any time soon, so a holistic
multi-pronged approach is recommended, centered around nutrition, stress
management, and both physical and mental exercise.

Having said that, no size fits all, so it's
critical to understand and address individual needs, priorities and starting
points.

Monday, August 1, 2016

I
sense that knowing a celebrity with a brain tumor somehow helps brain tumor
victims feel like they aren’t the only ones fighting this wicked disease.

It
draws attention to the need for a cure among the celebrities’ following which
almost always expands beyond the brain tumor community of victims, survivors,
doctors and the like.

It
humanizes the impact of brain cancers.

So Today
I ran across an article about Gord Downie from the Canadian Press who reports
that “Canadian rock band the Tragically Hip begins what is being billed as its
final tour after lead singer Gord Downie was diagnosed with a deadly brain
cancer.”

If you are a Gord Downie fan, you may want to read about Glioblastoma (GBM) which is the brain tumor disease the article reports that he has. :-(

I
then tracked down an article posted on MedicalNewsToday.com http://www.medicalnewstoday.com/articles/311306.php
- that gave more details. The article’s headline reported that “At a scientific
meeting this week, researchers hail their evidence about a new soluble drug
containing liquid aspirin as a potential breakthrough in the treatment of brain
tumors.”

In
this article, by Catharine Paddock PhD, reports that at the “Brain Tumours 2016
- From Biology to Therapy” meeting, held in Warsaw, Poland, 27-29 June, 2016
the news was announced.

An
important part of the announcement was the claim that Prof. Geoff Pilkington
and Dr. Richard Hill have figured out how to cross the “blood-brain barrier.”

Paddock
writes that, “Researchers trying to develop cancer drugs for treating brain
tumors have found it very difficult to create compounds that pass through the
blood-brain barrier. Many cancer drugs that can defeat tumors in other parts of
the body cannot pass through.”

Apparently,
this new breakthrough enables cancer drugs to do just that.

Paddock
goes on to report that “They ( i.e. Prof. Geoff Pilkington and Dr. Richard Hill)
say their findings suggest the new drug could be highly effective against
glioblastoma, one of the most devastating and most common type of brain tumor
in adults say their findings suggest the new drug could be highly effective
against glioblastoma, one of the most devastating and most common type of brain
tumor in adults.